Access Provided by your local institution at 11/12/12 8:26PM GMT

Original PaPer

Sociodemographic Differences in Fears and Mistrust Contributing to Unwillingness to Participate in Cancer Screenings
Jenna L. Davis, MPH Shalanda A. Bynum, PhD, MPH Ralph V. Katz, DMD, MPH, PhD Kyrel Buchanan, PhD, MPH B. Lee Green, PhD
Abstract: Effective provider-patient relationships are vital for positive patient health outcomes. This analysis assessed sociodemographic differences in fears and mistrust related to the provider-patient relationship, which may contribute to unwillingness to participate in cancer screenings (CSs). The data are from a stratified, random-digit dial telephone questionnaire of non-institutionalized households in New York, Maryland, and Puerto Rico. Statistically significant results indicate that Hispanics, compared with Whites, were nearly two times more likely to report that fear of being a guinea pig and lacking trust in medical people would make them unwilling to participate in CSs. Additionally, those with less education were over two times more likely to indicate a fear of being embarrassed during the screening would make them unwilling to participate in CSs. These results highlight areas where health professionals can improve interactions with their patients and be attentive to their fears and/or mistrusts to promote CSs utilization. Key words: Cancer screening, provider-patient relationship, sociodemographic characteristics.

ancer is the second leading cause of death in the United States.1 Racial/ethnic disparities are apparent in cancer incidence and mortality rates with Blacks possessing the highest rates, followed by Whites and Hispanics.1 Although many cancers are preventable or highly treatable if detected early, some groups, including racial/ ethnic minorities, do not have ready access to quality preventive care, thus decreasing the likelihood of early diagnosis and subsequent survival of cancer.1 For example, observed disparities in cervical cancer incidence and mortality rates for Hispanics can be partially attributed to lower rates in screening practices.2 In order to achieve health
Jenna Davis is Research Coordinator, Department of Health Outcomes and Behavior at Moffitt Cancer Center. shalanDa Bynum is Assistant Professor, Department of Preventive Medicine and Biometrics at Uniformed Services University of the Health Sciences. Ralph Katz is Professor and Chair, Department of Epidemiology & Health Promotion at New York University College of Dentistry. KyRel Buchanan is CEO of Sanoa Consulting, LLC. B. lee GReen is Senior Member, Department of Health Outcomes and Behavior at Moffitt Cancer Center. Please address correspondence to Jenna L. Davis; 12902 Magnolia Drive, MRC-CANCONT; Tampa, FL 33612; (813) 745-6298; jenna.davis@moffitt.org.
Meharry Medical College Journal of Health Care for the Poor and Underserved 23 (2012): 6776.

68

Sociodemographic differences in mistrust of cancer screenings

equity, increasing participation in and access to quality preventive health services, such as cancer screenings, is vital and of national importance according to Healthy People 2020.3 Currently, cervical, breast, and colorectal cancer screenings are recommended based on evidence that they can reduce both cancer incidence and mortality.4,5 Screening tests may begin as early as age 21 and continue through age 75.4 Screening frequency varies and can range from annually to every 10 years, depending upon the type of screening conducted. In the United States, through education and awareness, screening rates for colorectal cancer have increased and have remained stable for breast cancer from 20002010.6 Despite this trend in screening participation, rates fall below Healthy People 2020 targets.3 Moreover, cervical screening rates have slightly decreased over the past 10 years.6 Racial/ethnic disparities are also present regarding screening behaviors, with screening prevalence lower among minorities.6,7 For example, in 2010, a greater proportion of Whites (59.8%) had received their recommended colorectal screenings than of Blacks or Hispanics (55.0% and 46.5%, respectively).6 In addition to race/ethnicity, factors such as education, socioeconomic status, availability and use of/access to health care services also affect screening rates. Specifically, those with lower educational attainment are less likely to be screened for breast, cervical, or colorectal cancer.68 Given the complexity of the United States health care system, lack of education may further hinder an individuals ability to navigate the system, thereby preventing them from fully participating in medical encounters.9 While cancer screening is critical to all individuals health, data clearly indicate that minorities and those less educated are among the most vulnerable.10,11 Moreover, minority populations, especially Hispanics, have been under-represented in national and community studies.12 Therefore, the reasons for disparities in screening behavior are less clear among these populations than others. The few studies that have investigated barriers to cancer screenings among Hispanics have uncovered inhibitors such as accessing quality care and poor provider-patient relationships.13,14 Psychosocial barriers, such as patient readiness, fear of embarrassment with the screening procedure, fatalistic beliefs, and lack of awareness have also been noted.7,11,1316 Although health insurance has also been identified as a contributor to differences in screening participation, studies indicate that racial/ethnic disparities persist even among universally insured (e.g., Medicare-insured) populations. This finding highlights the existence of factors other than health insurance that may influence screening behaviors.17,18 The provider-patient relationship is vital for positive patient health outcomes.19 This relationship is multi-faceted, consisting of issues related to communication, trust, asymmetry, knowledge, and decision-making. A providers role in encouraging and increasing preventive health behaviors, such as cancer screening, is undeniable.10,20 Unfortunately, minority patients, especially those not proficient in English, are less likely to receive empathy from physicians, establish rapport with physicians, receive adequate information, and be encouraged to participate in medical decision making.21 A providers failure to recommend a screening test serves as a key barrier to early detection and prevention efforts.22 Specifically, research findings indicate that only half of patients referred for colorectal cancer screening tests complete the procedure, primarily because of ineffective provider-patient communication and test concerns.23 Within the context of the provider-patient relationship are issues of asymmetry

Davis, Bynum, Katz, Buchanan, and Green

69

and trust. Asymmetry, defined as the difference in knowledge, experience, or power between provider and patient,24[p.2126] is particularly relevant in relationships where educational and cultural differenceswhich often characterize minority populations compared with the majorityexist. Although it may not be possible to completely overcome asymmetry, it can be minimized.24 Trust remains a critical issue in research and practice when working with minority populations, especially African Americans, and has been shown to affect cancer screening rates.11,2527 This paper focuses on identifying sociodemographic differences in fears and mistrust related to the provider-patient relationship that may contribute to unwillingness to participate in cancer screenings. The results will assist in developing effective strategies for improving the provider-patient relationship to ultimately improve cancer screening participation. Adherence to ethical principles when working with vulnerable populations is particularly important, given the historical maltreatment of minorities in research and the contemporary differentials in treatment within the health care system.28 Better understanding issues of fears and mistrust are essential to the mission of combating health disparities and reversing these long-standing inequities.

Methods
The data were collected from a disproportionally allocated, stratified, random-digit dial telephone survey of non-institutionalized adults (18 years of age and older) living in New York City, New York; Baltimore, Maryland; and San Juan, Puerto Rico. The random-digit dial questionnaire was administered using a computer assisted telephone interviewing (CATI) system. The survey, the Cancer Screening Questionnaire (CSQ), was developed by a multi-disciplinary, multi-university research team within the New York University (NYU) Oral Cancer RAAHP (Research on Adolescent and Adult Health Promotion) Center, a National Institute of Dental and Craniofacial Research/National Institutes of Health Oral Health Disparities Center and was conducted in 2003. The CSQ was adapted from a previously validated questionnaire, the Tuskegee Legacy Project Questionnaire, which was designed to assess willingness to participate in biomedical research.29 English and Spanish versions of the questionnaire were administered per participant preference. The English version of the questionnaire was pilot-tested among people residing in mainland-U.S. recruitment cites (Baltimore and New York). The Spanish version of the questionnaire was validated through pilot-tests in San Juan, Puerto Rico. The CSQ addresses a range of issues related to the beliefs and willingness to participate in cancer screening examinations in an ethnically diverse sample. Each of the three cities was sampled independently, and with specific racial/ethnic group targets within each city: 300 African Americans (150 in New York City, 150 in Baltimore); 300 Puerto Rican Hispanics (150 in San Juan, 150 in New York City); and 300 Whites (150 in New York City, 150 in Baltimore). Baltimore, New York, and San Juan were selected as recruitment cities to ensure a wide geographic and racial/ethnic representation. The initial sample allocation across strata (within cities) was based on expected yields computed using exchange incidence data. Sampling weights were produced because of the complex design of the CSQ Study. A more detailed explanation of the study design, as well as justifications of methodological decisions, is described

70

Sociodemographic differences in mistrust of cancer screenings

elsewhere.30,31 A total of 1,148 participants completed the telephone survey. The original targeted enrollment goal of 300 for each racial/ethnic group was met or exceeded within each city: 355 African Americans, 311 Puerto Rican Hispanics, and 482 non-Hispanic Whites. Response rates (the percentage of completions of residential households dialed) for San Juan, Baltimore, and New York were 58%, 51%, and 45%, respectively, with an overall completion rate (percentage of completed interviews once contact was made with the targeted household subject) of 82.6%. The study was approved by the University of Puerto Rico and New York University Institutional Review Boards. Measures. This analysis assessed four fear/mistrust variables related to the patientphysician relationship. The variables were measured by asking How much would the following interfere with your taking part in a cancer screening exam... 1) fear of being a guinea pig; 2) fear that test results are not kept private/confidential; 3) fear of being embarrassed during the exam; and 4) lacking trust in medical people? Responses were measured on a five-point Likert response scale: Not at All, A Little, Some, A Great Deal, and Totally Interferes. The responses were collapsed into Interferes (A Little, Some, AGreat Deal, and Totally Interferes) vs. Not at All because the degree of interference was not of interest. The sociodemographic variables assessed were race/ ethnicity (African American; Hispanic; White), gender, education level (Less than High School; High School Grad; Some College; College Grad; Professional Degree), age group (1829 years old; 3059 years old; 6094 years old), and income level (less than $20,000; $20,000$34,999; $35,000$49,999; $50,000$74,999; $75,000 or more per year). Statistical analysis. Frequency distributions of sociodemographic variables were computed to show the characteristic distribution of the sample. Sample sizes are unweighted and corresponding percentages are weighted. Multivariate logistic regressions with each of the fears/mistrust variables as the dependent variable and the sociodemographic variables as the independent variables were calculated to assess differences in population groups. Odds ratios (ORs) with 95% confidence intervals (CIs) were produced and were adjusted for each of the other sociodemographic variables in the model. A variable for city was also included in the model to account for any differences between Puerto Ricans residing in New York and those residing in San Juan.32 SAS version 9.1 (SAS Institute Inc., Cary, North Carolina) was used for data analyses and a level of p#.05 was deemed statistically significant.

results
The weighted frequency distributions of the sociodemographic variables are listed in Table 1. The sample included slightly more minorities (African Americans and Hispanics) than Whites. A majority of the sample was between the ages of 3059 years old, and with lower income levels. Table 2 shows the statistically significant logistic regression results. Hispanics, compared to Whites, were nearly two times more likely to report that fear of being a guinea pig (OR51.94; 95% CI: 1.103.43) and lacking trust in medical people (OR51.72; 95% CI: 1.012.94) would make them unwilling to participate in cancer screenings. Individuals indicating a household income of $35,000$49,999, compared with $75,000 or more were less likely to report that a fear of test results not being kept private/confidential (OR50.42; 95% CI: 0.200.89) would make them

Davis, Bynum, Katz, Buchanan, and Green

71

Table 1.
WeigHTeD FreQUenCY DiSTriBUTiOnS OF SOCiODeMOgraPHiC VariaBleS (n51148)
Variables Gender Male Female Race/Ethnicity African American Hispanic White Age Group 1829 years old 3059 years old 6094 years old Education Level Less than High School High School Grad Some College College Grad Professional Degree Income Level $20,000 $20,000$34,999 $35,000$49,999 $50,000$74,999 $75,000 n 401 747 355 311 482 216 679 253 182 312 241 252 153 327 246 155 149 146 % 45.5 54.5 31.1 22.4 46.5 22.9 53.4 23.7 12.1 27.1 22.8 23.9 14.1 24.2 24.5 16.0 16.7 18.6

unwilling to participate in cancer screenings. Those with a professional degree were less likely than those with only a college degree to report that fear of being a guinea pig would make them unwilling to participate in a cancer screening (OR50.48; 95% CI: 0.260.92). Individuals with less than a high school degree (OR52.74; 95% CI: 1.36 5.56) and high school graduates (OR52.36; 95% CI: 1.324.22), compared with college graduates, were both over two times more likely to indicate fear of being embarrassed during the screening would make them unwilling to participate in cancer screenings.

Discussion
Cancer screening currently offers opportunities for early detection, diagnosis, and treatment of multiple cancers. Given the disparities in cancer screening utilization and adverse health implications of such disparities, it is critical to understand the factors contributing to the problem. The physician influences a patients cancer screening

72

Sociodemographic differences in mistrust of cancer screenings

Table 2.
STaTiSTiCallY SigniFiCanT lOgiSTiC regreSSiOn* reSUlTS BeTWeen SOCiODeMOgraPHiC CHaraCTeriSTiCS anD rePOrTing UnWillingneSS TO ParTiCiPaTe in CanCer SCreeningS
Variables Fear of being a guinea pig Hispanic vs. White Professional Degree vs. College Grad Fear that test results are not kept private/confidential $35,000$49,999 vs. $75,000 Lack of trust in medical people Hispanic vs. White Fear of being embarrassed during the cancer screening High School Grad vs. College Grad Less than High School vs. College Grad Odds ratio 1.94 0.48 0.42 1.72 2.36 2.74 95% Confidence interval 1.103.43 0.260.92 0.200.89 1.102.94 1.324.22 1.365.56 p-value .023 .026 .024 .047 .004 .005

*Adjusted for race/ethnicity, age, gender, educational level, income level, and city
utilization and decision-making.20,33 Therefore, the purpose of this analysis was to assess sociodemographic differences between fears and mistrust as related to the provider-patient relationship that may contribute to unwillingness to participate in cancer screenings. The results indicate that racial/ethnic and educational discrepancies exist regarding fears and mistrust and highlight areas where health professionals can improve in the way they interact with their patients, particularly with Hispanics and those with lower educational attainment. Hispanics lacked trust in medical professionals and feared being a guinea pig, whereas those less educated cited a fear of being embarrassed during conduct of the cancer screening. This is consistent with studies that illuminate racial/ ethnic and educational divides regarding provider-patient relationships and communication. Trust has been a long-standing issue between minorities and the medical establishment.25 The majority of research investigating trust among minorities has focused on African Americans.25,34 The results of this study indicate that additional studies or interventions that examine the relationship between trust and medical engagement and asymmetry among the Hispanic population are needed. Based on the definition of the ideal provider-patient encounter provided earlier in this article, it may be that Hispanics do not believe that the medical personnel will act in their best interests. However, according to a study by Chan et al., Hispanic males consider themselves machos and prefer that cancer screening information come from the doctor rather

Davis, Bynum, Katz, Buchanan, and Green

73

than from printed materials.15 Medical providers must understand such preferences and become equipped to provide screening information in a manner that is culturally sensitive so that each person will have a reasonable understanding of the others beliefs, expectations, and goals.24 Hispanics fear of being used as a guinea pig is similar to findings in breast cancer research with African American women. Results revealed concerns about being used as a guinea pig,33 while other studies identify a broader fear that physicians exposed African American patients to unnecessary risks.25 A further sub-analyses within Hispanic subjects by city revealed New York City Puerto Rican Hispanics were more likely to express a fear of being a guinea pig in cancer screenings compared to San Juan Hispanics. However, additional research should investigate this sentiment among acculturated Hispanics. Providers must work to dispel patients fears and be respectful of the context for their concerns. Given the demographic shift in the United States, which has now labeled Hispanics as the largest minority group,35 significant efforts must be directed towards increasing trust, as well as understanding additional impediments to and promoters of cancer screenings among Hispanics. The fear of embarrassment expressed by those with less education is not unusual. Fear of embarrassment has been associated with lower levels of adherence to cancer screening recommendations previously.15 Additionally, less educated people often have lower health literacy, thus making it more difficult to process and act upon prescribed health information. In a recent study by Zapka et al., differences in screening recommendation were noted based on the physicians perception of patients ability to comprehend.10 Specifically, primary care providers who reported that patients usually/ sometimes had difficulty understanding colorectal cancer information were less likely to recommend fecal occult blood tests and colonoscopy or colonoscopy only.10 Moreover, literacy rates are predicted to decline over the next decade, creating additional issues for provider-patient communication.36 Education seems to be increasing in relevance concerning health care and health behaviors. Researchers advocate introducing new models, such as integrating health literacy into adult literacy programs, to equip those with lower literacy to adequately communicate during clinical encounters.36 Other interventions have already garnered success by working with providers and patients.16,37 Many consider developing positive provider-patient relationships to be the responsibility of the provider,22 however some would argue that there is mutual responsibility. Therefore, interventions have focused on better equipping physicians for the clinical encounter as well as improving patients communication skills.37 For example, a health literacy intervention aimed at improving providers communication resulted in an increase in colorectal cancer screening recommendations.16 Moreover, a tailored education-coaching intervention by Street et al. in 2010 resulted in cancer patients being more participatory in the encounter and better able to communicate pain.37 Studies have also emphasized the importance of the feedback loop and closing the loop (i.e., the patient is able to restate what they have learned during the encounter) to ensure that information transmitted during the clinical encounter is understood by the patient.16,22,38 Given the complexities of screening recommendations and that individuals with low educational attainment often have low health literacy, closing the loop is particularly vital. Additionally, communication could be especially difficult when there is a language barrier present (such as with non-English speakers).

74

Sociodemographic differences in mistrust of cancer screenings

To further reinforce and encourage adherence to screening recommendations received during the clinical encounter, incorporation of programs such as non-physician patient navigation systems have also been suggested.12 Such interventions may assist in reaching the Healthy People 2020 health communication objective of increasing the proportion of people reporting that their providers have satisfactory communication skills, which includes patients being involved in decision making to their satisfaction and providers listening carefully to them, explaining things in a way that they can understand, and perhaps most importantly, showing them respect.3 Improving provider-patient communication holds tremendous promise because it offers one of the more readily changeable contributors to cancer screening adherence. Evidence clearly suggests that there is an urgent need to improve provider-patient communication. However, according to Zapka et al. in a colon cancer study, What to discuss [in the clinical encounter] is both a practical and an ethical question.10[p.518] The guidelines recommend describing the full menu for ethical reasons, perhaps both to stress their equivalence for preventing and detecting colon cancer and to give patients the chance to match their preferences and values to the test options. Will providers make the ethical or practical decision and how can patients be empowered to assist providers in making the ethical decision? The answer to these questions have far-reaching implications for reducing fears and anxieties, thereby increasing cancer screening adherence and eliminating existing disparities. limitations. As the Cancer Screening Questionnaire does not obtain data on the respondents health insurance nor on the race/ethnicity of the respondents provider, exploration of the influence of those factors on the findings was not possible. Literature demonstrates the race/ethnicity of a provider affects the provider-patient relationship and therefore would have been of more value to our study. Additionally, individuals without health insurance may have limited opportunities to see a provider. Providerpatient communication is an important indicator of a strong provider-patient relationship; however, this factor was also not specifically measured and thus, could not be assessed. These limitations present opportunities for future investigations. Conclusion. Given that the provider-patient relationship is an important factor in adhering to cancer screening recommendations, this article explores the differences between sociodemographic groups in fears and mistrust, as related to the providerpatient relationship. It is vital that providers treat their patients in an ethical manner to reduce disparities in cancer screening participation. The results highlight areas where health professionals can improve interactions with their patients, particularly with Hispanics and those with lower educational attainment. Health professionals should be aware of and sensitive to patients fears and mistrusts to promote cancer screening utilization for all.

acknowledgments
The authors would like to acknowledge the support of the National Institute of Dental and Craniofacial Research/National Institutes of Health, which funded this study via grant #U54 DE14257.

Davis, Bynum, Katz, Buchanan, and Green

75

notes
1. 2. 3. Siegel R, Ward E, Brawley O, et al. Cancer statistics, 2011. The impact of eliminating socioeconomic and racial disparities on premature cancer deaths. CA Cancer J Clin. 2011 JulAug;61(4):21236. Downs LS, Smith JS, Scarinci I, et al. The disparity of cervical cancer in diverse populations. Gynecol Oncol. 2008 May;109(2 Suppl):S2230. U.S. Department of Health and Human Services/Office of Disease Prevention and Health Promotion. Healthy people: 2020. Washington, DC: U.S. Department of Health and Human Services/Office of Disease Prevention and Health Promotion, 2012. Available at: www.healthypeople.gov. Centers for Disease Control and Prevention. Cancer prevention and control. Atlanta, GA: Centers for Disease Control and Prevention, 2011. Available at http://www.cdc.gov /cancer/dcpc/prevention/. Rim SH, Joseph DA, Steele CB, et al. Colorectal cancer screeningUnited States, 2002, 2004, 2006, and 2008. MMWR Surveill Summ. 2011 Jan; 60(Suppl):426. Centers for Disease Control and Prevention. Cancer screeningUnited States, 2010. MMWR Morb Mortal Wkly Rep. 2012 Jan;61(3):415. Wee CC, McCarthy EP, Phillips RS. Factors associated with colon cancer screening: the role of patient factors and physician counseling. Prev Med. 2005 Jul;41(1):239. Klabunde CN, Cronin KA, Breen N, et al. Trends in colorectal cancer test use among vulnerable populations in the United States. Cancer Epidemiol Biomarkers Prev. 2011 Aug;20(8):161121. Lange F. The role of education in complex health decisions: evidence from cancer screening. J Health Econ. 2011 Jan;30(1):4354. Zapka JM, Klabunde CN, Arora NK, et al. Physicians colorectal cancer screening discussion and recommendation patterns. Cancer Epidemiol Biomarkers Prev. 2011 Mar;20(3):50921. Greiner KA, James AS, Born W, et al. Predictors of fecal occult blood test (FOBT) completion among low-income adults. Prev Med. 2005 Aug;41(2):67684. Bazargan M, Ani C, Bazargan-Hejazi S, et al. Colorectal cancer screening among underserved minority population: discrepancy between physicians recommended, scheduled, and completed tests. Patient Educ Couns. 2009 Aug;76(2):2407. Ashing-Giwa KT, Padilla GV, Bohrquez DE, et al. Understanding the breast cancer experience of Latina women. J Psychosoc Oncol. 2006;24(3):1952. Ashing-Giwa KT, Padilla GV, Bohrquez DE, et al. Survivorship: a qualitative investigation of Latinas diagnosed with cervical cancer. J Psychosoc Oncol. 2006;24(4):5388. Chan EC, Haynes MC, ODonnell FT, et al. Cultural sensitivity and informed decision making about prostate cancer screening. J Community Health. 2003 Dec;28(6): 393405. Khankari K, Eder M, Osborn CY, et al. Improving colorectal cancer screening among the medically underserved: a pilot study within a federally qualified health center. JGen Intern Med. 2007 Oct;22(10):14104. White A, Vernon SW, Franzini L, et al. Racial and ethnic disparities in colorectal cancer screening persisted despite expansion of Medicares screening reimbursement. Cancer Epidemiol Biomarkers Prev. 2011 May;20(5):8117. Berry J, Bumpers K, Ogunlade V, et al. Examining racial disparities in colorectal cancer care. J Psychosoc Oncol. 2009;27(1):5983.

4. 5. 6. 7. 8. 9. 10. 11. 12. 13. 14. 15. 16. 17. 18.

76

Sociodemographic differences in mistrust of cancer screenings Fuertes JN, Mislowack A, Bennett J, et al. The physician-patient working alliance. Patient Educ Couns. 2007 Apr;66(1):2936. Metsch LR, McCoy CB, McCoy HV, et al. The role of the physician as an information source on mammography. Cancer Pract. 1998 JulAug;6(4):22936. Ferguson WJ, Candib LM. Culture, language, and the doctor-patient relationship. Fam Med. 2002 May;34(5):35361. Wolf MS, Baker DW, Makoul G. Physician-patient communication about colorectal cancer screening. J Gen Intern Med. 2007 Nov;22(11):14939. Denberg TD, Melhado TV, Coombes JM, et al. Predictors of nonadherence to screening colonoscopy. J Gen Intern Med. 2005 Nov;20(11):98995. Kalliainen LK, Lichtman DM. Current issues in the physicianpatient relationship. JHand Surg Am. 2010 Dec;35(12):21269. Corbie-Smith G, Thomas SB, St. George DM. Distrust, race, and research. Arch Intern Med. 2002 Nov 25;162(21):245863. Durant RW, Legedza AT, Marcantonio ER, et al. Different types of distrust in clinical research among Whites and African Americans. J Natl Med Assoc. 2011 Feb;103(2): 12330. Scharff DP, Mathews KJ, Jackson P, et al. More than Tuskegee: understanding mistrust about research participation. J Health Care Poor Underserved. 2010 Aug; 21(3):87997. Smedley BD, Stith AY, Nelson AR, eds. Unequal treatment: confronting racial and ethnic disparities in health care. Washington, DC: National Academy of Sciences, 2003. Katz RV, Kegeles SS, Kressin NR, et al. The Tuskegee legacy project: willingness of minorities to participate in biomedical research. J Health Care Poor Underserved. 2006 Nov; 17(4):698715. Katz RV, Claudio C, Kressin NR, et al. Willingness to participate in cancer screenings: Blacks vs Whites vs Puerto Rican Hispanics. Cancer Control. 2008 Oct;15(4):33443. Kressin NR, Manze M, Russell SL, et al. Self-reported willingness to have cancer screening and the effects of sociodemographic factors. J Natl Med Assoc. 2010 Mar; 102(3):21927. Claudio C, Katz RV, Green BL, et al. Cancer screening participation: comparative willingness of San Juan Puerto Ricans versus New York Puerto Ricans. J Natl Med Assoc. 2007 May;99(5):5429. Sheppard VB, Adams IF, Lamdan R, et al. The role of patient-provider communication for Black women making decisions about breast cancer treatment. Psychooncology. 2011 Dec;20(12):130916. Born W, Engelman K, Greiner KA, et al. Colorectal cancer screening, perceived discrimination, and low-income and trust in doctors: a survey of minority patients. BMC Public Health. 2009 Sep 25;9:363. Kaiser Family Foundation. Distribution of U.S. population by race/ethnicity, 2010 and 2050. Menlo Park, CA: Kaiser Family Foundation, 2010 Mar. Available at: http:// facts.kff.org/chart.aspx?ch=364. Freedman AM, Miner KR, Echt KV, et al. Amplifying diffusion of health information in low-literate populations through adult education health literacy classes. J Health Commun. 2011;16(Suppl 3):11933. Street RL, Slee C, Kalauokalani DK, et al. Improving physician-patient communication about cancer pain with a tailored education-coaching intervention. Patient Educ Couns. 2010 Jul;80(1):427. Schillinger D, Piette J, Grumbach K, et al. Closing the loop: physician communication with diabetic patients who have low health literacy. Arch Intern Med. 2003 Jan; 163(1):8390.

19. 20. 21. 22. 23. 24. 25. 26. 27. 28. 29. 30. 31. 32. 33. 34. 35. 36. 37. 38.